actemra

[pwalker801]

Diagnosed with PMR late Febr 2018 & GCA in April--currently taking 50 mg of prednisone daily. Started on Acterma injections, have had 4 infections, my question is for 2 days after each injection I'm very lightheaded, dizzy and fatigued. Is anyone else experiencing this, and has your body eventually gotten use to this. My CRP and SED rate are so low so I know the combination of the prednisone and Acterma are working so want to continue this protocol.

[Hidden]

Hi pwalker

I have no experience but dizziness is listed as a side effect. If the inflammation of GCA and PMR is still active that could cause fatigue and pred could be part of it.

rxlist.com/actemra-side-eff...

[pwalker801 in reply to Hidden]

My last sed rate was 2 and the CRP was .2--wouldn't you think that would indicate the inflammation was down?

[Hidden in reply to pwalker801]

Yes. But that's the inflammation not the actual illness itself I think???. I am sure someone with better understanding of how actermra works will be along. It's is supposed to work differently I think but the pred just manages the inflammation not the cause of it. I presume that. It's not just the inflammation that makes you yuk but the immune issues and vasculitis that underlie the illnesses. These still effect you when inflammation dampened. I may be completely wrong. I frequently am 😁

[PMRpro Ambassador in reply to Hidden]

To be honest - I don't think anyone really knows how Actemra works in PMR/GCA. Just it does seem to for many people!

[Hidden in reply to PMRpro]

Do they believe it suppresses the immune system? I have read a couple of the research articles but my brain won't retain the vocabulary that's used. One day I need to read a bit about the immune system itself...it's when it starts talking about the il6 but without a fundamental understanding of the inflammatory processes and AID I get distracted 😂

[PMRpro Ambassador in reply to Hidden]

I think it acts at some point on the biochemistry cascade of which IL-6 is the end product - and it is the IL-6 cytokine that creates the inflammation. So it stops the end-product being produced. But whether it has any effect on the trigger, the a/i disorder itself, I have no idea.

[Hidden]

Good luck, I hope you continue to succeed!!!!

[PMRpro Ambassador]

Sorry but please may I be a tad picky? It is ACTEMRA. It matters because if the name isn't spelt correctly the post won't come up if someone searches for past posts on it at some point.

[Polywotsit PMRGCAuk team member in reply to PMRpro]

Hi, have used admin edit tool and corrected spelling.

[Sho-Sho]

I was diagnosed with GCA in August 2016, starting on 60mg- - I have not taken Actemra and have felt dizzy and light-headed for the last 21 months. My Rheumatologist says it is due to both pred but more so from the GCA, even though like you my inflammatory markers show nothing. I am now on 8mg and struggling, massive fatigue. So I think it is difficult to pinpoint on any one thing. Sorry not very helpful but it will get better eventually.

Good luck

[Terry615]

I’ve been taking weekly injections of Actemra for 10 months and have not experienced dizziness or any other side effects. I’ve been able to discontinue the methotrexate and down to 3 mg pred daily.

There’s a longer version of how it works, but here’s a short version: your body produces a monoclonal antibody called interleukin-6. In GCA, RA, and PMR, it’s elevated, and that causes a powerful inflammatory response in the body. Actemra affects the body’s receptors for interleukin-6 and thus helps your body ward off the painful, damaging effects of these illnesses. It’s not for everyone, but for those of us who have experienced serious side effects with the pred, it’s a godsend. It takes a little while to begin to feel the benefits of it, but I hope to be completely off pred in the next 3 or 4 months. Right now, my Actemra is approved with insurance company for another year and can can renew after that. Will wait plenty of time after finishing pred to begin tapering shots. But it was a good treatment choice for me.

[CRW-68]

I have only had my first Actemra infusion three days ago. I have noticed a slight increase of dizziness and farigue, but only slightly more than I was experiencing on only Prednisone.

I sure hope the Actemra works. Yesterday I was able to titrate down from 30 mgs of Prednisone to 20. I stay on this dosage for 2 weeks, then down another5 mgsto 15mgs.

Good luck to you on your Actemra journey. It is comforting to read that others are on the same journey as yourself. A road becoming more traveled.